Today we remember Dylan James Manning (DJ) who died on this day three years ago from a rare genetic disorder called Tay-Sachs Disease. He was three months shy of his 5th birthday.
Each year we vow to remember Dylan’s life and continue his legacy by spreading the word—Andy by wearing the blue “Just Believe” bracelet he hasn’t removed in nearly five years--and by having our children participate in a balloon launch memorial in Dylan’s name.
This year the balloon launch was preceded by a large storm raging spanning nearly a 200 mile stretch. But miraculously, 15 minutes before we were to gather at the site where Dylan is buried, the clouds began to fade and the sun peeked out. Divine intervention! The kids each had a balloon to release to the heavens, and this year an added treat: butterflies! Each of the girls opened their own envelope to reveal a Painted Lady butterfly and made a wish. We place our butterflies on Dylan’s grave site bench, along with a kiss. (Photos to come.)
Sadly this was the first year that attended the memorial. Though I had been at the funeral services and have kept Dylan in my prayers, I have avoided facing the family more than I had to. And I realized why. I am afraid. Afraid to face the facts of life and death, particularly when it comes to children. But what I have realized is that it’s not about me. Not one bit. It’s about the parents and the support we can be to them.
As we drove up to Dylan’s grave and exited the car, I felt and overwhelming feeling of sadness that took my breath away, but as I glanced over at his parents and two younger brothers and other family rejoicing in his life I realized then that with tragedy comes purpose. And Dylan’s purpose is to educate people about how the disease can be prevented.
Tay-Sachs is a preventable but fatal disease, historically found mostly in Ashkenazi Jews, however research has categorized French Canadians, Louisiana Cajun, Pennsylvania Dutch as high risk, and preliminary data suggests persons of British Isle and Italian decent are to be considered high-risk.
A simple blood test can determine if you are a carrier of the gene –both parties must be carriers and you then have a one in four chance of having a child with the disease.
Although it’s increasing difficult to explain to my children as they’ve gotten older and more inquisitive just what happened to Dylan and where he is now; that he was the same age as my oldest when he left this Earth and joined God in Heaven, and to explain how he got there (Alexandra asked if Tinker Bell sprinkled pixie dust and he flew to heaven like Peter Pan. My answer was, yes.) I know it’s important for them to know and will become even more so when they are grown. My hope is that it will strengthen their character so that they will be compassionate toward others and not take the easy way out of difficult situations by making themselves unavailable, as I mistakenly have, but to extend their hand to those who need it. It’s also important for them to know that with sadness there is hope.
If only we all could learn as children.
For more information, please visit http://www.ntsad.org/. To learn about DJ and his life please see http://www.djsfoundation.org/ or http://www.caringbridge.org/cb/viewJournal.do?method=executeInit.
Sunday, August 2, 2009
Today we remember Dylan James Manning (DJ) who died on this day three years ago from a rare genetic disorder called Tay-Sachs Disease. He was three months shy of his 5th birthday.
Thursday, July 9, 2009
In the early 80s he had it all. Amazing dance moved, more chart-toping records than you could count and music adored by millions of fans around the word. I was a fan. A big fan.
Much speculation of child molestation in 2002 took over casting a shadow on the levels of fame he was able to accomplish for the 30 years prior. I personally have a zero-tolerance for that kind of sickening activity, but also am a true believer in the American justice system and so when Jackson was acquitted of any wrongdoing (even if a $20 million settlement had been paid to the family…more on that in a minute) I believed he was innocent.
In my opinion as a parent, I would not want one dirty red cent from someone who ruined the lives of my children. I would want revenge—suffering in prison, or worse. So when the accuser family settled for the millions, in my opinion, they also just settled and I do not believe any parent would just settle. The truth will lay with the two parties involved, and God.
So when Jackson died late last month, I was saddened but celebrated his life by sharing with my kids stories of Michael Jackson and even dancing to a number of favorites as his music was played for a 24-hour stint following his shocking death. I must say, I was shocked. An icon was dead. Part of my childhood was dead. Not to mention that Farrah Fawcett also died, another 70s icon for whom my two cousins and sister would mimic, reciting lines from the TV show Charlie’s Angels, and making our own “guns” from sturdy cardboard wrapped in aluminum foil.
At the end of the day, whatever people choose to believe, Michael Jackson was a musical genius. Someone who broke barriers to allow black artists music to be played on MTV, and someone who also was a humanitarian, opening his home and Neverland Ranch to thousands of ill and disadvantaged children who would otherwise not have a chance to have a childhood. These are the stories that are not told widely, and overshadowed by the evil speculations.
And now Jackson is gone and has left behind three children. The article below is probably the best article I’ve read thus far about Jackson as a father. And as parents, we can relate and all have a connection—like it or not.
Jackson's kids emerge from behind the veil
AP, Jul 7, 2009 8:00 pm PDT
For all the hasty preparations, hand-wringing over security, breathless media competition to scoop details and soul-wrenching performances, the essence of Michael Jackson's memorial service came down to 20 poignant, powerful seconds: the moment when 11-year-old Paris-Michael Jackson inched up to the microphone and, in a statement no one saw coming, referred to the late pop superstar as "Daddy."
It was a remarkably humanizing moment. Then again, it was remarkable just to see Jackson's three children in public to begin with.
A fiercely protective father, Jackson rarely brought his brood out into public, covering their faces in veils and party masks to protect their identity when he did.
Now here they were, unveiled, before an audience of thousands at Staples Center and millions more around the globe. Starting out seated in the front row, the three youngest Jacksons eventually joined the rest family onstage as the two-hour service wound to a close.
Dressed in the same dark suits and yellow ties as the rest of the Jackson men, 12-year-old Michael Joseph Jr., known as Prince Michael, chewed gum and toted the memorial service program; 7-year-old Prince Michael II, known as Blanket, held his program and clutched a Michael Jackson doll.
Paris, wearing a black dress with white trim, turned a small patent-leather purse over in her hands as other family members spoke. And then a dramatic hush fell over the crowd as family members whispered that the little girl, whose lifetime of public exposure amounted to a small handful of paparazzi photographs, Paris-Michael wanted to say something.
She furtively emerged from the tight circle of family members, who rushed to lower the microphone to her level. And with her uncle Randy on one side and aunt Janet on the other, Jackson's little girl stood center stage.
"I just wanted to say," Paris began weakly.
"Speak up, sweetheart, speak up," Janet encouraged, sweeping the girl's long hair back. "And get close."
Paris put one hand behind her neck, another on the microphone, and began again.
"Ever since I was born, Daddy has been the best father you could ever imagine," she said, her tiny voice cracking.
Rebbie and Marlon Jackson moved in closer to comfort their niece. She shut her eyes tight.
Then she wrapped her hands — little fingernails painted red — around the microphone and fought back tears as she continued: "And I just wanted to say I love him — so much."
She collapsed in tears into her aunt's arms.
"It's OK, baby. It's OK," Janet Jackson said as she held Paris close. Prince joined in on the hug.
And all at once, Jackson wasn't the larger-than-life King of Pop, or Wacko Jacko the tabloid freak. He was a doting father who had left three adoring young children behind.
He was "Daddy."
Saturday, May 23, 2009
My baby is two and boy does she like to tell all. She’ll run right up to you, arch her back and come in close—face-to-face-- and yell in the sweetest, most innocent voice “I Anni. I two!”
How on earth did she turn two—already? It truly feels like yesterday that she was born. I cannot believe how quickly time has passed.
I have to admit that I have a lot of sad feelings with witnessing Annika grow up versus seeing the same with Alexandra. When I think of Alexandra growing up, I get excited. I am eager to see her try new things. Growing up for her is exciting. With Annika, it’s somewhat sad. She’s my baby, and always will be no matter the age. I often wish I can freeze time.
I remember my mother telling me a story about when I was young. It was about how she would hold me in her rocking chair each night before bed. As an infant, my legs were curled tightly toward my belly and I fit my mother’s arms naturally. Later she recounted how sad she’d feel as my heels rested on her thigh, and how much sadness she would feel as the weeks passed and eventually my legs were over hers—my legs dangling below. I always remember that story when I hold my baby and now understand the sadness my mother felt because I feel it too every night I hold her tight, singing her favorite song and gently pushing her hair aside. Her legs are so close to dangling below.
Don’t get me wrong. I am in no way suggesting I will limit Annika in anyway. I will afford her every opportunity I do with Alexandra. And I do. Annika has a way of keeping up with the older kids as if she’s completely bypassed two and went right on to four. She’s a trooper and there is no stopping her. She’s determined. Her curly hair bouncing behind her as she quickly runs to catch up to the older kids. She’s just precarious, adventurous, and above, precious.
As with my pregnancy with Alexandra, I kept a journal of my pregnancy with Annika so as not to remember any detail of that very short time if your life when you’re carrying a life. Here is the entry from the day Annika was born. A moment I am sure never to forget.
…Wednesday, May 16
It’s 2 a.m. and I am awoken by a strange feeling in my stomach. I automatically figured it was my stomach feeling funny from having eaten a lot at dinner so I tried to use the bathroom several times but nothing happened. In fact, I continued to get some strange crampy feelings every few mounts. So I headed on the computer to do a search about real labor vs. false labor and was timing the cramping I felt. I did this for about 45 minutes to an hour, when I finally woke daddy up and told him that I believed it was real labor. We called the doctor and explained how I was feeling and she said to head over to the hospital. So we called Gee Gee and she came over at about 4 a.m. I headed into the shower, and grabbed my already packed bags and stopped into your sister’s room. I gently picked her up from her crib and held her tight, crying. I have never been away from her ever and am feeling overwhelmed by that, and by the fact that you will be a new addition to us just any time now.
Well, we headed to the hospital and took Rt 202 assuming we’d get to
When we got to the hospital, they took me in the triage center and checked my dilation. Much to my surprise, I was a whopping five centimeters dilated! Half way there! I really thought they would say three…
My contractions are three to four minutes apart still and I feel pretty good I am admitted and now in a great room and just watching some TV, taking walks to see the newly born babies and talking with the doctor. At 7 a.m. the Dr. Wheeler asked if I wanted my water broken to speed things up, so I agreed. No meds, please. J
The doctors started getting your bed and exam table ready and asked if we though the blue card or pink card should be first—meaning boy or girl. I say blue, daddy insists on pink. We’ll soon find out who’s right!
I sat up the rest of the time in a semi-squat position and just waited for each contraction to past. I really am feeling pretty good at this time, and daddy seems to be calm. The nurses are really nice and making me feel comfortable s everything seems to be great. I am watching the Today’s show so I am happy about that too!
All of the sudden contractions started getting intense and I want to get up and go to the bathroom. Now I feel like I need medicine so I asked daddy to get the nurse, but she’s gone to get the doctor. You are on your way!!! The nurse checked me again and I am 9 ½ centimeters. I am advised to just push. So I did, lying down. Not sure why… Then they sat me up and told me to push again. I could swear you’re going to weigh 9 lbs so I pushed with every single inch of energy I have in one-two-three pushed you were HERE at 9:31 a.m.!!! Daddy yelled out that you are a girl! I can’t believe it! A girl!!! I am sooo excited, though I would have been happy if you were a boy too. Just the idea that you are a girl and we already have Alexandra is so exciting! You weighed in at 7lbs, 5 oz. I am amazed! I really thought you’d be so much more since you were late! I am asked if you look like Alexandra and I am amazed that you really do! Holding you for the first minutes was so surreal. I live that experience and feelings each and every time I hold you now. I am so in love all over again J
Wednesday, May 6, 2009
The Easter bunny comes at night to nibble on his treats and in return, delivers treat-filled plastic eggs and a very special note to the girls! Most of the eggs contain stickers, and some have small candies and chocolates, and a gift for each of the girls. This year he left a terrific baby doll for Annika and a butterfly house and larvae for Alexandra!
This year our Easter was grand. It started with an egg hunt at home with grandma, grandpa and Auntie Jen. Then after church we headed over to pop-pop and GeeGee's to have dinner with the cousins. Getting together with the cousins is always a treat as there are SO many! This is only a sampling of the total. Below are Brittany, Emily, Trey, Christina, Katie and Olivia. Not pictured are Lili and RJ, both of whom are infants. And to top it all off, this is only from Andy's one set of step brothers and sister! The girls have another cousin in Michigan, Trevor, from one of Andy's other step-brothers, not to mention the many second cousins in Connecticut, Maryland and North Carolina.
With six step siblings on Andy's side, and one sister for me, we have a terrific family and are so delighted that our girls have such an amazing group of kids with whom we hope they will be close. We only wish we could see everyone much more often...
Wednesday, April 22, 2009
Little Annika. She’s just the sweetest little thing, and to me is still just a baby. Sadly my baby will be two in a mater of a few short weeks, and already has expressed and interest in the potty. Now I am not sure I ever did share the trials and tribulations about trying to potty train Alexandra. I will have to search back to determine if it’s been written. If not, I most certainly can write a book about this experience! In a sum of one word—difficult. But with Annika, it seems that she wants to be like the big kids and going on the potty is a task that is desired, not dismal. So we’ve allowed her to sit on the potty on a few occasions just for fun, certainly not expecting any real results. I mean, my last potty training experience took me up to the moment we cancelled preschool for fear Alexandra would get kicked out for not being potty trained.
This past Sunday, Annika gladly strips herself of her diaper and straddles the squishy Sesame Street potty ring. Then it’s off to the bath we go. This little squirt started with her normal routine and peed! YIPPEE! She then repeated the act, after nearly having an “accident” by stopping herself, addressing her act with an Ut-oh, and ran to the potty, starting and stopping her steam of urine and she went. Alexandra and I were her best cheerleaders, as you can imagine! We were overjoyed. Then today, the kicker. She tells me she’s got to poop and says potty. So we mosey on to the bathroom. I grab a chair for my prior experiences with this situation have been stop and go and lead to hours on end where I am hanging my head in the toilet, and not for the repercussions for having one to many the night before! Annika has an actual bowl movement! Holy cow, I never thought that would happen without fear. You hear stories and read so much about how kids fear pooping in the potty but this little kid was elated! YIPPEE! She was so proud of herself as were all of us. Way to go, Anni!
So I am not getting to excited about this (no, really) for I know I am sure to have my work cut out for me but am just so overjoyed to share this excitement with others. This is the first step, I know, but a huge one. I wont be tossing away the old wipes and diapers just yet. As a matter of fact I just ordered two more jumbo boxes today. But the prospects make me pretty happy—and on the same hand, sad. For my baby isn’t really a baby anymore.
Wow. I am shamed. Has it really been this long since I’ve last posted anything about the girls and their life? So much has happened. Each day is like a new turn of events. Some are new, exciting and adventurous and some -- not so much. But at the end of the day, no matter what has transpired, no matter how many times I have been defied, begged, threatened or bartered -- after the lights are out, and the kisses and prayers are recited I look at their little faces and feel an overwhelming joy and sheer gratitude for them and the most special place they have hold on my heart.
Well here is a rundown on life as the Wright Ladies:
For starters, February held a crazy turn of events for us. Andy decided to take advantage of a bum economy and start his own business where there is fueling potential in the residential and commercial markets but in piece parts. In other words, as people are downsizing and reducing their overhead, there is still work to be done but no one to do it—unless you are a consultant and for those guys, business has the potential to boom, big-time. So, he’s following his dream, and we all applaud that and know it will be great! Wright Consulting Partners is in full bloom and the seeds are being planted. We are excited for this new opportunity! While there are lulls here and there while things are getting started, Andy’s been able to spend a lot more time with the girls. He’s seeing so much of their personalities and enjoying seeing them grow and change daily—a rarity for many dads, including Andy, whose hectic work schedule kept him away too many nights. We know that’s short lives and that travel is imminent but for now, he and the girls are enjoying each other’s company.
This business decision was made jus before and during our annual trip to Grammy and Granddad’s in Florida, where the girls enjoyed themselves immensely in the warm weather. We didn’t do Disney this year—maybe again when Annika is old enough to enjoy it—but Alexandra got to swim everyday, twice a day and I got tons of sun therapy. Andy got a ton of great advice from big business leaders, as well as a great number of strong leads. Too bad he had to work during his “vacation” but it will all be worth it in the end. Trips to the beach were an added bonus. Walking along the shores of the Gulf in the dead of winter is unmatched.
The girls have sprouted in personality. Annika is now talking, which was on the horizon for many months. Each day now as she approaches her second birthday she’s saying more and more. Something we’d seen much earlier on with Alexandra but then again, Alexandra was not nearly as agile, I think, with respect to keeping up with the older kids and having good balance. Likely a drawback from not walking early.
Alexandra has shown that she’s a big girl now. She’s four going on 14—seriously. She’s shared with us that her classmate Nicholas is “handsome like a prince”! She’s demonstrated a real zest for science, which we applaud and encourage every step of the way. For Easter she asked the Easter Bunny for a butterfly house in lieu of candy. When we shopped around for the right gift, she keenly pointed out to me the many science kits that appealed to her—everything from tasting and baking kits, to bug collection, early paleontology kits and how to astronomy. This is of great interest to us particularly since neither Andy nor I were very good with science as a kid! Thankfully we have great researchers and scientists from my work in pharma who we can call on every step of the way!
Annika is using the potty! She’s gone three times now and had her first bowl movement today! I will post a separate entry about this MILESTONE!
And Alexandra is getting more inquisitive each day as well. Just last week she asked me why a man on TV had a brown neck, and head and hands. He’s black, if you didn’t get this already. I have to say I have been waiting this question and was relieved that it came when we were home—alone. I was able to explain to her that God made so many people, and each of us is different. How boring the world would be if we all looked a like. She accepted my answer and has moved on to the next pressing question. Maybe next will be, where do baby’s come from? Oh, correction. We’ve been there already. I did mention she’s only four, right?
Well, that’s pretty much it in a nutshell. I am certain I am missing so much but will be sure to keep mindful of daily jots going forward. As they say in the media, stay tuned!
Tuesday, January 20, 2009
Each day I like to tell the kids a story about something significant around the world. Seems fitting for a former journalist to tell these stories. After all, I always did enjoy current events in school, we have first-line relatives in Europe and a good friend moving this week to Australia so why not give my kids and early start, right?
Today’s story, fittingly, was about the 44th President of the United States, Barack Obama. I started my story by explaining what the president does. “He makes rules for the county,” I say, likening him to a king. My daughters understand, and certainly pay attention to me when I mention kings and queens. Next I tell them that the president has two daughters. Alexandra’s eyes grow very large when she learns that Obama’s daughters are seven and 10! And finally I explain that the president, his wife and his two little girls will live in the white house in Washington DC, “it’s like a castle,” I say, again likening the experience to kings and queens, princes and princesses.
Later in the day when Andy arrives at home I asked Alexandra to recite to him what she learned today about the President—who he is, where he lives, what he does, etc. She quickly notes that he has two daughters and their ages. She remarks that he’s President of the United States and that it is a country and that we live in Philadelphia which is part of the county. Wow, we are so on a roll now! I am feeling oh so proud. Then I ask her to tell daddy where the President lives, and help her by sneaking in “the whi…” when she jumps in and yells “The White Castle!” Um, ok. Close enough. Nonetheless, it’s dinner time and suddenly I have burgers in mind…
Barack Obama was sworn in as the 44th president of the United States and the nation's first African-American president Tuesday and I am so proud to have shared this experience with my children. This truly is an amazing day.
I encourage you to read the entire speech from Obama's inaguration. The words are powerful and can be digested a bit better when read.